The following links will provide more information about Huntington’s Disease (HD), other Australian and international HD websites, and social networking forums
Other Australian Associations
Huntington’s Australia
This website provides a web presence for the Australian Huntington's Disease Association (National).
Australian Huntington Disease Association (NSW)
Australian Huntington Disease Association (WA)
Australian Huntington Disease Association (Qld)
Australian Huntington Disease Association (Tas)
Australian Huntington Disease Association (SA & NT)
International HD websites
International Huntington Association
European Huntington´s Disease Network
Huntington’s Disease Society of America (HDSA)
HDSA National Youth Alliance
Huntington Society of Canada
Huntington’s Disease Association (United Kingdom)
Huntington's Disease Association of Ireland
Scottish Huntington’s Association
Huntington's Disease Association of Northern Ireland
HD Associations of New Zealand:
Japan's Huntington's Disease Network
Message Boards, Chatrooms and Blogs
HD Australia
We recommend this a community run resource for all Australians affected by HD
The Huntington's Disease Advocacy Centre (HDAC)
US community run site that provides help for families. Includes a message board HUNT-DIS and links to individual stories, blogs, videos, and family websites.
WeAreHD.org
New US social networking site for the HD community.
http://clubs.yahoo.com/clubs/huntingtonsatrisk
http://clubs.yahoo.com/clubs/huntingtonsdiseasesupportclub
http://clubs.yahoo.com/clubs/onebighuntingtonsfamily
HD forums provided by Yahoo
General information
Better Health Channel
Victorian Government health information site
American National Institute of Neurological Disorders and Stroke
Stanford University HOPES Project
Provides scientific information for the lay-person
Your Genes Your Health,
A multimedia guide togenetic disorders
Wikipedia
Cure HD
Jim Pollard’s website
Jean Miller’s HD Links
Living with HD
Carers Victoria
Surviving the Maze
A series of fact sheets produced by Carers Australia on caring for an older person.
National Welfare Rights Network
Provides information and advice for people with Social Security or Centrelink problems.
http://www.chronicillness.org.au/index.htm
Centrelink
Local Councils in Victoria
Victorian Government DisabilityIntake and Response
Victorian Patient Transport Assistance Scheme (VPTAS)
VPTAS will reimburse costs associated with travelling to a HD clinic or otherspecialist appointments for rural families.
MultiPurpose Taxi Program
Offers discount taxi services
Carer Information Pack
Commonwealth Department of Health and Ageing kit for carers.
Commonwealth Respite and Carelink Centres
Centres provide information about community, aged care, disability and other support services and help to arrange respite care.
National Welfare Rights Network (NWRN)
The NWRN is a network of community legal centres throughout Australia which specialise in Social Security law and its administration by Centrelink.
Office of the Public Advocate
The website has information on all aspects of guardianship and power of attorney.
Maurice Blackburn
Provides free legal advice to people in the HD community on superannuation and wills.
Genetic testing & family planning
http://www.genetichealthvic.net.au
Provides predictive testing services for HD in Victoria
Genetic Support Network Victoria
Information and referral services for families and individuals with a genetic condition.
International guidelines for predictive testing
Huntington Society of Canada
Has two online publications on genetic testing for HD
Genetic "Russian Roulette"
Articleby Nancy Wexler about the experience of being "At Risk" for HD published in 1979
Monash IVF Program
Research
Websites with regular research updates:
HDLighthouse
HD Association (UK) HD research news
Stanford University HOPES Project
Provides research information for the lay-person
HD Drug Works (HDDW)
Websites of research groups/foundations:
Victoria Brain Bank Network
Collects post mortem brain tissue for research into brain diseases.
The Huntington Study Group
Group of clinicalresearchers from US, Canada,Europe and Australia
American National Institute of Neurological Disorders and Stroke
The Hereditary Disease Foundation
US group that funds HD research. Founded by Milton Wexler.
The Huntington Project
HD Drug Works
US site provides information on treatment options, drug development and clinical trials.
High Q Foundation
Funds basic medical and clinical research and drug development in the US.Drug development is t
CHDI
Funded by High Q Foundation to develop drugs that prevent or slow HD
Medical search services
MEDLINE Plus
Information for the community from the USNational Library of Medicine.
PubMed
Search service for health professionals from the US National Library of Medicine
The Merck Manual of Medical Information
Home Edition of US medical manual.
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